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Stuttering Back to School

8/31/2015

Summer is ending. Commercials for back-to-school sales flood TV, newspapers, and radio. The part of Target that once held lawn chairs and tiki torches now holds composition books and glue sticks. A mix of anxiety and excitement fills the air.

The new school year brings out anxieties and excitement in me as well. How will my students react to my way of speaking? Will I be able to communicate what I want when I want? Will there be new adults in my building who I have to talk to? How will they treat me? Will I be expected to share what I did over the summer in a faculty meeting? No matter how strongly I believe there is nothing wrong with my voice, these situations will probably always be stressful for me.

I think it’s good to be aware of these anxieties and remember that many of my students will be coming to school feeling the same way. Again this year I will be hosting the ‘collab’ class. This means I will have a number of disabled students in my homeroom and for math as well. Generally these are students with what are called ‘high incidence’ disabilities (learning disabilities, autism, attention deficit and speech and language difficulties). I love these kids and the gifts and variety they add. I will happily continue to host this class as long as they let me.

For the first time since I started teaching, I will have a student who stutters. I'm thrilled! I had an opportunity to spend a little time with him last year so we already have a rapport. Mostly we ate lunch together and played some basketball. Stuttering only came up a few times but I got the sense he didn’t like to talk about it. I might have been the same way at his age. This will be foremost in my mind as I plan out the first few days of school.

What I’m not excited about is the possibility of being asked to keep data on him. I don’t know if this will happen, but I have been asked to keep data on other IEP goals before. An IEP is an individualized education plan and is written by special educators and speech/language pathologists to target certain academic or behavior goals for identified students. Because I am also certified as a special educator I like to have input in writing goals, but I have never had the opportunity to work with an SLP in creating any.

To be honest, I really dislike keeping any data that I don't agree with. I did it last year when I reluctantly assessed all students using timed math fact fluency tests. The district decided that it somehow indicated proficiency if students could rapidly solve math facts. Never mind the fact that virtually everyone in the developed world has access to a calculator. Before we did the test, I reminded my kids that my dad is a doctor and doesn't always remember his multiplication facts and not to feel like this was any reflection on themselves. I also never showed the kids their scores unless they really pressured me.

I just cringe at this type of data collection. I am never going to keep tally marks for how often an autistic student tells me his birthday is coming or how many vocal tics a student with Tourette's makes. This might get me in trouble with my administration, but these goals are distracting and irrelevant. Comments about an upcoming birthday or some random sounds don't bother me or any students, and stifling those behaviors can cause discomfort with the student who feels the need to express them.

I'm not sure data collection itself is harmful to students. I find nothing wrong with setting and reaching goals. There are IEP goals I will gladly work on and keep data for. Math problem solving (i.e. story problems) is my favorite academic goal and if any student has math goals in their IEP, this one should be included. Likewise, behavioral goals that focus on organization also strike me as helpful. Perhaps it's because I am a tidy person, but it seems like organization is a valid thing to teach all students.

Perhaps what needs to change is that the students need to be more involved in setting their own goals: the goals need to reflect the real needs of the student, not a standardized set of data. This might mean goals are not always quantitative. Personally, if I wrote a goal for myself involving stuttering, it wouldn't be that I use prep sets 6/10 times when speaking words that begin with/m/. My goal would be that I had positive feels in 9/10 of my speaking situations. Special Educators and SLPs, in my experience, never write goals like those because they don't know how to measure them. It would take the student keeping track of their own data. But what is wrong with that?

As I head into the new school year the mixed emotions of excitement and anxiety will surely begin to balance out as I get to know my students and get comfortable with the new staff. Right away I will begin working on creating a classroom community that encourages personal growth that is meaningful and relevant to students’ lives. I'm sure I'll find ways to deal with IEP goals I find disagreeable and perhaps I'll come back to tell about it.

-Eli

4 Comments

ASHA and the (Ableist?) Dream of Accessible Communication for All

8/19/2015

2 Comments

This is not a post about stuttering. It is a post about how we are all of us bound together in complex and complicit ways.

Due to a long and very interesting history, SLP has become the dominant way to think about and engage with communicating bodies that are different from what society now takes to be “normal.” Medical and scientific practitioners have become the experts over our bodies. The American Speech-Language-Hearing Association (ASHA) capture the overall goal of SLP well in their vision statement: “Making effective communication, a human right, accessible and achievable for all.”

I wholly support this vision statement, taken at face-value. So many people have historically and continue to be marginalized because of how they communicate. Or more accurately, they are oppressed because they communicate in ways that society has decided are deficient. People are oppressed for typing rather than speaking their thoughts. For requiring assistance to type. For stimming. For stuttering. For talking with tics. We are oppressed because we don’t speak loud enough, or quick enough, or enunciate our words according to dominant linguistic norms. We are oppressed, in short, for having disability accents.

This, of course, needs to change.

My belief, however, is that ASHA has not thought carefully enough about what this phrase actually means. The disability rights movement has a long history, but this history has often times not included speech and communication disabilities and ASHA might accordingly be missing some really central things that the disability rights/studies movement has been critiquing for a long time. Since ASHA is central within the realm of SLP and is also an example of the assumptions of the wider medical community/society as a whole, it could thus be helpful to break the sentence down into chunks and think about each piece individually to criticize and ultimately reimagine some basic assumptions about disability and communicative bodies.

Making effective communication, a human right, accessible and achievable for all.

Let’s start with the big one: communication. Before we can unpack “effective communication,” we need to understand the seemingly basic idea behind communication. Unfortunately, there is nothing simple about communication; people mean a great many things by the single word. The most frequent meaning of “communication” today—and I would venture to guess, what ASHA means—involves transmitting our thoughts to another person. The purpose of speaking or writing in this sense is to get the ideas “locked in our heads” into the heads of our interlocutor or audience. Miscommunication occurs unless what we mean by our words is properly and precisely understood.

This belief that meaning is individual and interior is in large part tied to the political theory “classic liberalism” which itself is linked to capitalism. Communication is described by John Locke in the seventeenth century as transporting ideas (using words) much like one transports wheat across the ocean: words and wheat alike must not suffer corruption as they venture into the public sphere.

What is the disabled speaker/writer here but a risk, a danger: breakdown and blockage of the flow of ideas? I am increasingly convinced that our very conception and arrangement of communication is central to our oppression. We think of communication, as ASHA indicates, as the transaction of a paper-thin meaning: I own a singular meaning wrapped in a word that I must somehow get into your head. Breakdown is of course inevitable in this impossible situation. Yet rather than admitting the impossibility of liberal-capitalist communication, we pathologize and exclude more and more communicating bodies so we can pretend the system of communication is working fine. The system is not okay. It was broken from the start.

When we construct our communication practices around “transmitting ideas,” disabled people are always the ones who carry the burden of inevitable breakdown. If someone stutters they are to blame for faltering communication; it is never the listener’s fault for not understanding. Yet if a person is somewhat d/Deaf, it is never the speaker’s fault for the misunderstanding. In every breakdown, the responsibility falls uncritically on the disabled person. The system is incapable of dealing with communicative difference. It is pitiful, ableist to its core.

We need to rethink communication radically. Communication is, in my estimation, nothing like transmitting ideas, but is rather the act of making common (note the root word here), the activity of opening up a shared space within which meaning is created together. Meaning is public, not private. It is an activity that requires collective work, not a sterile and flimsy transaction. Communication is a thick, though often difficult, means of existing with and through others. Stuttered words are brought into common spaces and contribute to the difficult work of meaning-making just like fluent words. There is no difference save that dysfluency is more honest about the process.

If we believe that communication is a shared practice of creating meaning together, we wouldn’t have to pathologize non-normative bodies so that we could reintegrate them on ableist terms. This, of course, would make it difficult to profit off of our dysfluent yet possibly-fluent-in-the-future bodies.

Making effective communication, a human right, accessible and achievable for all.

From this perspective, “effective” communication already looks a little suspect. Effective on whose terms? Effective for what purpose? It is important to note that we are not oppressed because we don’t communicate. I’ll say it again: we are not oppressed because we don’t communicate. We are oppressed because we do not communicate on ableist terms—by their standards of fluidity, time, and transparency of meaning. We are oppressed because our forms of communication are not efficient cogs in the machinery of capitalism, where time is money and money is a fluid transaction. We are oppressed and rehabilitated, in other words, because we do not communicate “effectively.” Yet effective communication is at the same time nothing but respectability politics. How we communicate makes people uncomfortable. Our awkward pauses open up gaps in the “normal” flow of conversation. Our faces contort, so people look away. We are uncomfortable. ASHA’s mandate is thus in part meant to make our communicating bodies respectable and proper so that we can assimilate into mainstream society and their ableist ways of relating to each other.

Making effective communication, a human right, accessible and achievable for all.

There is something interesting going on here. By using the language of ‘accessible’, ASHA is speaking the language of the disability rights movement. Yet by putting ‘accessible’ together with ‘achieve’ they are using this language to change our bodies rather than make space for them. We have written about the power that ableist narratives of “overcoming disability” have within our society. The narrative of “overcoming” adversity and struggle despite the challenges of disability is one that resonates loudly. Actually making communication accessible for all would mean fighting against ableism, teaching those who can’t be bothered to listen to us to care, creating communicative space for us, and operating massive social campaigns to speak against speech discrimination. What ASHA means is quite different: extending a medicalized “apparatus” into every nook of society to fix our bodies such that we can overcome our disabilities (and our fears associated with disability) and thus be integrated into an ableist society. There is nothing resembling accessibility here, at least as meant by disability rights movement.

Making effective communication, a human right, accessible and achievable for all.

This, again, is a curious phrase nestled into ASHA’s vision statement that is more than a little misleading. Upfront, and I will return to this, it must be noted that nowhere is effective communication proclaimed to be a human right. This is a clever rhetorical move that naturalizes and legitimizes ableist practices used to normalize communicative practices. The idea that communication itself is a human right is a little more solid. Article 19 of the 1948 Universal Declaration of Human Rights proclaims the right to “freedom of opinion and expression,” a right that has been somewhat haphazardly adopted in 2003 and 2005 by the UN-convened World Summit on the Information Society (WSIS) as a right to communicate. This “right” does not directly apply to conversational communication, however, but is rather focused on global telecommunications. Yet debating whether or not communication is enshrined as a human right is likely missing ASHA’s point. Proclaiming that communication is a human right is a political statement, a statement of what AHSA believes is and should be true.

However, as I noted above, by slipping ‘effective’ into the equation, ASHA is making a vastly different claim. ASHA is asking people to take the uncritical notion of ‘effective,’ with all the ableist standards it implies, as a fundamental necessity. They are in force arguing that SLP is necessary because of a human right—or, even more strongly—that access to SLP is itself a basic human right. There is nothing benign about this statement.

Yet even if we would accept, for the sake of argument, that effective communication is or should be a human right, we need to ask why the language of “human rights” is being invoked in the first place. In other words, what is the rhetorical function of “human rights” in this vision statement? There is a large body of literature that critiques the discourse of human rights as serving those who have the most power and continuing to disenfranchise the most marginalized. At the same time, the discourse of human rights sounds good and is widely used to justify international foreign policy and capitalist interests. In a similar way, I suggest that ASHA’s use of “human rights” sets communication disability up as something to be philanthropically and humanistically pitied and tolerated as it doesn’t demand any real change in how we organize our society while propping the gate open for a medicalized industry to profit off of disabled bodies.

Making effective communication, a human right, accessible and achievable for all.

Lastly, this process requires experts and is in fact something only experts can do. Normalizing disabled bodies is a technocratic process, a techne, a “making.” It is something that requires vast amounts of statistics, training, tools, and of course, money. Notice the implied subject of this sentence. The vision statement is about us, without us. It is something we, the dysfluent, cannot hope to achieve on our own. The vision statement thus not only naturalizes SLP but secures its future.

Conclusion

Given this lengthy critique, what is the response? How might we imagine “making communication accessible and achievable for all” differently? First off, we must understand that assessable communication is never simply a matter of getting better techniques but of changing power dynamics. Paraphrasing disability theorist Rod Michalko’s words to me this summer, perhaps disabled people are not listened to not because society can’t “hear us” but simply because people don’t want to. No amount of speech tools, self-talk, and assisted technology will help people communicate with an ableist world that doesn’t give a shit about our voices. Reclaiming our voices, “making communication accessible and achievable for all,” requires that we stop pretending that disabled communicators will be included if we can just be a little more normal. It requires recognizing our oppression as oppression. It requires recognizing communication not as individual and innate capacities, but as a set of relations between people that can never be solved with technological or therapeutic intervention. The ableist and oppressive relations between speaker and listener, parents, medicalized “experts,” allies, the non-vocal, and teachers are the problem. For dysfluent liberation to be possible, for communication be “accessible for all,” social relations need to be transformed. It is here that ASHA has not only missed the point but has reintrenched our oppression.

-Josh

2 Comments

Disfluency vs. Dysfluency: What's in a Name?

8/5/2015

6 Comments

People have pointed out that that we at Did I Stutter regularly use the term ‘dysfluent’ rather than the conventional ‘disfluent’. This was and continues to be a very deliberate choice for us. While this difference is in some ways nitpicky, humour the language nerd in me for just a moment. For us, the use of these two spellings, these two prefixes, shows the diverging political understanding of stuttering between the disability studies/rights movement and the medicalized disciplines and industries.

So what’s the difference: dis- vs. dys- ?

Dis- is originally a Latin prefix that means “lack of” or “not.” It is used as a fairly simple negation (as in the instances of “dislike” and “disavow”), removal (as in “dismember”), or reversal (as in “disassociate”) (OED).

The term “disfluency” is similarly used to indicate a type of speech that is merely not fluent. It is a sterile and clinical term that turns our wild forms of speech variation into a simple lack or failure judged against the presumed normalcy and desirability of smooth speech. ‘Disfluent’ hides its values behind an apparent objectivity.

Dys- is originally a Greek prefix indicating “bad, difficult” or “destroying the good sense of a word, or increasing its bad sense” (OED). Unlike dis-, dys- is not a simple negation, but marks a transgression: something has gone wrong, particularly in a moral sense.

We accordingly take ‘dysfluency’ to be a far more honest term than ‘disfluency.’ While ‘disfluent’ feigns at being objective and sterile, ‘dysfluent’ recognizes that when we stutter we are not simply performing a lack, but we are transgressing the entire moral code of how society expects us to speak. To stutter is to disobey, to overstep the narrow boundaries of able-bodied speech.

Chris Constantino recently claimed that stuttering is a form of civil disobedience. Using the term ‘dysfluent’ helps us at DIS be aware of the subversive possibilities of our unpredictable and unruly speech. If stuttering is transgressive, let’s own that and make it ours.

Obviously how people use words is far more important than how they are spelled, which puts definite limits on the value of word analysis. People who use ‘disfluent’ aren’t necessarily bound to medicalized notions of speech and can still use it to mean something more transgressive. However, the fact that ‘disfluent’ is the accepted standard within medicalized communities compells me in itself to describe my speech differently. There is nothing clinical about how I talk. Our voices are anything but a lack.

-Josh

6 Comments

Stuttering Back to School

ASHA and the (Ableist?) Dream of Accessible Communication for All

Disfluency vs. Dysfluency: What's in a Name?

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